What Every Childcare Provider Should Know About Coping with Grief after the Death of a Baby from SIDS

As a child-caregiver, you are a major force in shaping the lives of children entrusted to your care. You are an important support for families, enabling them to pursue career or educational goals.

The significant role you play in the lives of children and their families often is unrecognized. But remember that it is the very work you do — caring for and bonding with the child — that makes the service you provide so valuable and makes you an important link in the family chain.

The SIDS Building Blocks Series provides support to help families, caregivers and children build the coping skills they need after a baby dies from Sudden Infant Death Syndrome (SIDS).

Edited by Charles A. Corr, Ph.D.

How Infant Loss Resources Can Help
Until the answer is found, Infant Loss Resources is organized to help in the fight for every child’s life and to serve those who are or may be touched by the tragedy of SIDS.

Professional support to health care professionals and educators who are already involved with SIDS families.

Current and pertinent medical information about SIDS in an understandable context to SIDS families and the community.

Medical consultation to families and physicians.

Support services through subsequent pregnancies and births.

Quarterly newsletters, monthly mailings and a lending library.

The Death of an Infant and Its Impact
Based on the relationship that you have developed with a child and its family, it should not be surprising that when a child dies of SIDS while in your care, it has a profound impact on you. You may feel overwhelmed, isolated and torn between conflicting emotions. You may wonder “how” to grieve for a child who “wasn’t even your own child” or how to express your loss without “overshadowing” the family’s grief.

Caregivers are not exempt from powerful feelings of grief, anxiety, and guilt. Feelings about a baby are not dependent upon the length of time one has known the child. Caring for a baby brings out feelings of protectiveness and a sense of responsibility in everyone. This sense of responsibility can lead to overwhelming surges of guilt. We all wish we had more control over the important things in life.

Questions and concerns of child-caregivers are often similar to those of parents: “Why did this happen?”; “What did I do wrong?”; “Could I have done something to prevent the death?” Many caregivers often experience the same physical symptoms that parents encounter. You may have difficulty concentrating, sleeping, or eating. Some caregivers report stomach pains, tightness in their chests, or an “ache” in their heart. You may have an urge to get away, yet experience a dread of being alone.

One caregiver stated, “I became so overprotective and on the alert that I was exhausted.” If you feel so overwhelmed that it is interfering with your day-to-day activities and/or it seems to continue for longer than you feel is appropriate for you, consult with SIDS Resources, Inc. or another counseling resource for additional support.

Special Concerns
Caregivers may have other special concerns: the initial trauma of finding the baby and dealing with the crisis, the worry that they will never be able to care for another baby, fear of losing their license or being “closed down” by authorities, and the uncertainty of their relationship with the parents. Because of the secluded nature of their work, many caregivers report a feeling of isolation and “going through it all alone.”

When a child dies of SIDS in a child-care setting, caregivers must handle the crisis: discovering the baby, calling the rescue squad, trying to revive the baby, taking care of other children at the home or center, and possibly the notification call to the parents. Then, if the child is taken to a hospital, the caregivers often find themselves waiting for some word while in the child-care surroundings.

The provider’s relationship with the parents frequently is now uncertain and uncomfortable. Even if they know the parents well, they may not be sure how the parents will feel about seeing or hearing from them. Will the parents blame them for the death? Will seeing them later on be too painful a reminder? Decisions about contacting the family first or waiting to hear from them and about attending the funeral services are often extremely difficult.

Caregivers also worry about their capacity to care for another baby. You may find yourself questioning your abilities as a parent and a caregiver. It is difficult to decide when to resume work or if you should continue to care for infants. Fear that another death could occur may be overwhelming. It may seem impossible to resolve feelings of blame and helplessness, especially when you are surrounded by constant reminders.

As part of the healing process, some caregivers have found it helpful to do something special in memory of the baby, with the parents’ permission. This could include planting a tree, making a memorial donation, or visiting the cemetery.

SIDS Building Blocks
As one child-care provider said, learning about SIDS and getting support from family, co-workers, and friends “might not take away all the guilt or pain, but it will help.” Information, compassion, and resources can become a “lifeline to recovery.” Caregivers often find it difficult to reach out for support, and may feel they do not have the right to seek help because the child was not their own. People may not recognize the bond that was formed between the caregiver and the baby. As a caregiver, you are accustomed to being the one who is always counted upon to care for others. In this situation, who cares for the caregiver?

Infant Loss Resources, Inc. is available to help you and the children in your care understand the loss of a baby to SIDS. The Building Blocks Series is designed to help families, caregivers and children learn to live healthy and satisfying lives after the death of baby from SIDS by providing information and support. SIDS Resources can put you in touch with other child-caregivers who have experienced the tragedy of SIDS if you wish to have an opportunity to share your feelings and concerns. This type of contact is often very helpful. SIDS Resources also provides educational programs on SIDS designed especially for child-caregivers.

Infant Loss Resources, Inc. serves those who are or may be touched by the tragedy of Sudden Infant Death Syndrome by providing services for families, education for professionals, community education, and financial and other support for research.

Facts About SIDS
If a child in your care dies of SIDS, it is important that you receive accurate information regarding SIDS.

SIDS occurs in an apparently normal, healthy baby during a period of sleep. The infant is later found unresponsive. The death has occurred quickly and quietly.

SIDS most commonly occurs in infants between the ages of one month and one year. The majority of deaths (90%) occur before six months of age. The peak age for SIDS is 2-4 months old.

The risk of SIDS is greater for low birth weight babies, babies of mothers who smoke during and after pregnancy, babies of young mothers, male babies, and babies of multiple births (e.g. twins or triplets).

SIDS can strike a family of any race, religion, ethnic, or economic group.

None of the possible causes of SIDS should result in pain or suffering to the baby.

Misinformation About SIDSSIDS Cannot Be Predicted or Prevented: Because public awareness and the number of studies concerning SIDS have increased dramatically, SIDS appears frequently in the news media and medical literature. Occasionally, such reports create the illusion that the cause of SIDS has been found. It is important to restate that SIDS continues to be an unsolved problem. Even with our current scientific knowledge, victims cannot be identified beforehand. There is still no way to determine which baby may die of SIDS and a mechanism of death remains unknown. Therefore, there are no known measures to assure the prevention of a SIDS death.

SIDS is Not the Result of a Contagious Illness: SIDS is not contagious, there is no reason for unusual concern in cases where an infant is exposed to another who subsequently dies of SIDS. Also, there is no need to be concerned about contamination from the clothing, bedding, or furniture of a baby who has died of SIDS. Older children are not at risk because SIDS rarely occurs after the first year of life.

SIDS is Not Caused by Child Abuse or Neglect: The general appearance of a SIDS baby may be misleading. After death, gravity causes blood to pool in areas of the body that are lower (that is, if the child is lying face down, blood will drain to the face). The result appears to be a large bruised area, but this actually occurs after the death of the baby. This is less of a problem for infants in child-care settings than in the home situation, since the child-care setting involves day time naps and the providers are more likely to find babies sooner before the blood has pooled.

Choking is Not the Cause: SIDS is not caused by vomiting and choking. Often blood-tinged froth is found around the mouth or on the bedding of the dead infant. This is a part of the death process, but does not cause the death. Occasionally milk is found around the infant’s nose and/or mouth, but this has also been shown to occur after death, and at autopsy the milk is found not to have blocked the internal air passages.

SIDS is More Complicated than Suffocation: Suffocation, meaning complete blockage of the airways, is not the cause of SIDS. If the pathologist doing the autopsy thinks that this has happened he/she will not call the death SIDS. Some researchers theorize that a SIDS death may be triggered when a baby exhales carbon dioxide, it becomes trapped in the bedding, and the infant rebreathes air, high in carbon dioxide and low in oxygen. This is one of many theories – others include those involving temperature, heart rate, or blood pressure regulation – which can explain why sleeping on the stomach, soft bedding, and bedsharing are risk factors for SIDS.

About SIDS Research and Reasons for Risk Reduction Recommendations
The cause(s) of SIDS is/are not known at this time. Some researchers believe strongly that SIDS results from a common final mechanism, while other researchers believe that some of our difficulty finding the cause of SIDS is because there are really two or more different causes of SIDS. Everyone believes that it is very complicated and that many factors probably come together at the wrong time to cause one baby to die of SIDS, while 700 other infants survive.

The most striking feature about SIDS remains the relatively narrow age range over which it occurs. While SIDS deaths can occur throughout the first year of life, the majority of deaths occur between 2 to 4 months of age. During this age period many changes are happening in the sleep cycle, heart rate, breathing rate, blood pressure and temperature regulation of the baby. With so many things changing, this is a “risky age period” (critical development period) for all infants.

Most researchers are confident that SIDS infants have an increased “vulnerability” as they go through the “risky age period.” Changes during the “risky age period” are controlled by the brain, particularly the lower part of the brain called the brainstem. As a result, this area was the first to receive attention of researchers as they sought to find out how infants who died of SIDS differed from infants who died of other causes. Researchers have noted a decreased number of cells in the arcuate nucleus, an area of the brainstem, which is important for breathing control. Researchers have also noted abnormalities in the cerebellum that may be related to blood pressure control and reticular formation, crucial for arousal. Current research is focusing on the different receptors to determine how risk factors, such as smoking or cocaine, increase the risk of SIDS. Researchers hope that they will eventually be able to develop a test to identify this “vulnerability” and which babies are at risk for SIDS.

Still, being “vulnerable” and going through the “risky age period” doesn’t mean that an infant will necessarily die. Epidemiological research has identified a number of “risk factors” that increase the chances of a baby dying of SIDS. While some “risk factors” cannot be modified (e.g. race or sex), other environmental “risk factors” can be changed. Some environmental risk factors include: sleep position, bedding and smoking. Since we cannot do anything about the “risky age period” and we are not yet able to identify “vulnerable infants,” we have chosen to try to modify environmental “risk factors.” This is the reason for the risk reduction campaigns. Still, until we understand the cause(s) of SIDS, we cannot prevent SIDS deaths.

Explaining the Death to Children
The other children in your care should be told about the death of the baby. It is important to be honest, concrete and clear in your explanations to help children understand what has happened. Open discussions enable you to see how much they understand about death.

By using the actual words, such as “dying” and “death,” you will be teaching children that this is a natural part of life, and they will not be confused over what has happened to the infant. Phrases such as “went away,” “lost,” or “went to sleep” often make children misunderstand a death and lead them to become fearful of going away, sleeping or becoming lost. Young children understand the literal meaning of words, so it is more helpful to use phrases such as “the baby’s body stopped working.”

You can explain that the baby has died of SIDS and no one is to blame because we do not know why it occurs. Reassure youngsters that SIDS only happens to infants. Also, it is important to talk with the families about how they explain death to their children, so the children do not receive conflicting messages.

Death is an emotionally-charged subject for all of us. It is natural to want to shield children from grief and to “be strong” and not display our emotions in front of them. However, the best “protection” we can give children is simple, truthful, consistent, and straightforward explanations and to be open to their questions. Children’s fantasies are scarier than reality. By being honest and displaying your own natural grief, you validate their feelings, give them permission to grieve, and help them learn appropriate mourning behaviors.

If a child is familiar with his or her own religious beliefs, death can be discussed in a religious context. Again, it is important not to use confusing euphemisms, such as “God wanted the baby,” which lead a child to believe that God may want him next, or that God is no friend to babies.

Children react to death in their own unique ways, according to their individual personalities, developmental capacities, and their past experiences with grief and loss. Preschool children often see death as magical and temporary. They believe that their own wishes have power. Sometimes siblings feel they are responsible for a death because of wishing the baby would go away.

Young children may cling to adults during a mourning period. Sadness may be portrayed through a decrease or unusual increase in activity or by being overly quiet. We all have different ways of expressing grief—anger, withdrawal, physical difficulties. There are not easy answers to children’s questions about death, even for professionals. You can help a child best by being open, honest, patient, and consistent in your behavior.

If you have questions about explaining death to children, call the Infant Loss Resources office nearest you (see back of booklet) or you can read the Building Blocks Helping Children Cope with the Sudden and Unexpected Death of an Infant for more information.

Interacting with Parents
After a SIDS death, all SIDS parents naturally question what they did wrong, what they did that they should not have done, and what they did not do that they should have done. It is important to remember that no one is to blame for a SIDS death. But that does not stop the continuous questioning. When an infant dies in a child-care situation, many parents naturally ask the same questions of the child-care provider.

Families are most often very supportive of the child-caregiver. They may express sadness about missing the last bit of time with their baby and may worry that they could have done something to save their child. The most frequent statement parents make is that they were spared the trauma of being the one to find the baby, but regret that the child-caregiver had to experience this.

Some parents can use the child-care provider only as a focus for their anger. Most parents will want to know the details surrounding an infant’s death. In either of these situations, this booklet can be helpful. If you are informed about SIDS, then you can answer parents’ questions and help them feel less distressed by the situation. Also, if you understand the dynamics of the situation you will be better able to take care of yourself.

Parents of other children in your care may also have questions of their own after a SIDS death. It might be helpful to arrange a meeting for these parents to reassure them about their children’s care. The staff at Infant Loss Resources can also be contacted to help arrange such a meeting and are available to speak to a group or individuals at any time. Infant Loss Resources can also provide additional literature that might be helpful.

Acknowledgements
This series was initially funded by contributions from the following sponsors:

The Koenig Family, in Memory of Louis Edward Koenig

United Way of Greater St. Louis, Venture Grant Fund

The York Children’s Foundation

McDonnell Douglas Employees’ Community Fund

Mallinckrodt Medical

About the Infant Loss Resources’ Building Blocks Series
Infant Loss Resources works with families, friends, and child-care providers to offer support and to supply current, pertinent, medical information about SIDS. Ongoing support is available to families and friends through individual counseling, support group sessions, home visits, peer contacts, and research update meetings. Infant Loss Resources also offers education, support, and resources for professionals who serve individuals impacted by SIDS and for the community at large.

The SIDS Building Blocks Series is an informative collection of booklets designed to focus on the needs of individuals who have experienced the tragedy of SIDS and professionals who may encounter those who have experienced SIDS.

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